Category: Stories 2022

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Fundraising for Lenè Grobler – Prader-Willi Syndrome, ADHD, Intellectual Developmental Delays

Lenè Grobler

Lenè`s story:

“Lenè was born a bit early at 36.5 weeks but she was a normal healthy baby as far as the eye could see. When she turned 1 years old I started to worry because she was far behind her cousin who was 2 months older than her. We stayed in a small town with no therapists and doctors, and my father said we must be patient with her as she might just be a bit slow.

When she turned 19 months old she started to lift herself and at 21 months she was walking, but not that well. We moved back to Klerksdorp when she was about 2.5 years old. I was still worried at this stage as she was still on nappies and did not talk. We took her to the Potch University – Care2Kids program to get her assessed and see if there is maybe something wrong. After this I finally got a school that had the time to care for her as the special needs school had her for 1 week and asked us to rather take her out as there is something seriously wrong with her.

In February 2022 she was assessed by Dr J.C.K Strauss who found her to have an intellectual disability as well as a serious communication delay. We started looking around for a Paediatric Neurologist to assess Lenè as we need assistance with treatment and advise on the way forward. In May 2022 she went to see Dr C Erasmus in Pretoria who diagnosed her with Prader Willi Syndrome and ADHD among a list of things. She has a wide range of symptoms and we are eager to find answers so that we can help her have a better quality life.

Lenè turns 5 years old in February 2023. She is currently on 2ml Risperdal a day. This alone is R1900.00 a month. The day to day from our medical covers it but this will soon be depleted. Thereafter, all medicine must be paid in cash. School costs R1850.00 a month and then nappies work out to R165.00 a week. I cannot look for better employment as I need to take off a lot, when she gets sick or is too difficult, so I only get commission on cases completed… no work, no pay.”

Please open your heart to Lenè and support our fundraiser for this family in need – all proceeds from the “Uplifted in Faith” bracelets are donated towards her ongoing medical care and expenses. Together we CAN make a difference!

Alternatively, please consider making a donation. Any and all donations welcome. REF: Lenè Grobler.

Fundraising for Lenè Grobler

Uplifted in Faith Bracelets

The “Uplifted in Faith Bracelets” consist of grey and white wooden beads with crystal, silver and diamante fillers.

Charm options:
Heart / Faith / Butterfly.

To place an order, contact the agent in your area or shop online.

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Fundraising for Amoré De Wet – 18Q Deletion Syndrome

Amoré de Wet

Amoré`s story:

“Amoré is a tenacious 7-year-old with 18Q Deletion Syndrome. She was diagnosed at six weeks old. 18Q Deletion Syndrome is a rare chromosomal disorder affecting the 18th chromosome. One in 40,000 newborns is affected by this chromosome disorder. There is no cure for her condition.

Symptoms range largely from case to case. Some features include low muscle tone, hearing loss, sight problems, heart defects, kidney problems and features of autism.

Amoré had open heart surgery at 6 months old and sees her cardiologist every 2nd year. She has been diagnosed with Nystagmus and Strabismus and wears glasses to help with these conditions.

There is currently no PMB for her condition and therefore all of her specialist consultations and therapy i.e. Occupational therapy, Speech therapy sessions are paid from their medical aid savings account which is generally exhausted within the first three months of the year. Most of her specialists are also not contracted in with the medical aid and therefore they need to pay cash for their visits. She is non-verbal but they pray for an augmentative and alternative communication device, which the medical aid does not pay for.”

By supporting our fundraiser for Amoré you can make a positive difference in her life – all proceeds from the “Never Give Up” bracelets are donated towards her ongoing medical care and expenses. Together we CAN change the world and help a child in need!

Alternatively, please consider making a donation. Any and all donations welcome. REF: Amoré De Wet.

Fundraising for Amoré De Wet

Never Give Up Bracelets

The “Never Give Up Bracelets” for Amoré consist of white, blue and silver wooden beads with silver and diamante fillers.

Charm options:
Angel / Cross / Hope-Awareness Ribbon.

To place an order, contact the agent in your area or shop online.

Never Give Up Bracelets © Arms of Mercy NPC
Never Give Up Bracelets

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Fundraising for Kian Ludick – Nephroblastoma, Wilms Tumor

Kian Ludick

Kian`s story:

“Kian had been having a lot of ear infections in the beginning of 2021. Our GP referred us to the nose, ear, and throat Specialist as well as a speech therapist, because he has not begun to speak and was nearing the age of 2 and they suspected that he has autism. On the date of his appointment he did not give his co-operation with the speech therapist and they decided to make arrangements with a Pediatrician to put him under local anesthetics while they conduct the ear test, and because he was not well, the pediatrician decided to do a full exam also while he was under. He discovered something hard on the left side of his tummy. We were sent for a sonar where they discovered the enlarged kidney. They did a CT scan where they saw the abnormal tissue on both kidneys.

Kian was diagnosed with Nephroblastoma on both kidneys, 26 March 2021, as well as an enlarged left kidney. He has been having monthly MRI scans and blood work in Johannesburg where he is treated by Prof Janet Poole. On the 12th of December 2021, he had his 3rd scan and they discovered the Wilms tumor that developed on the left kidney. He started with his weekly pre-operative chemo on 31 January 2021 in Kimberley, which he gets once a week for 6 weeks. On week 5 and 6 they will do a scan and reassess, he will also be having maintenance chemo after surgery.

The chemo has affected him worse than what we expected. He was admitted 4 days after his 1st session, and has been put on a double dose of blood pressure medication. He had moisture on his lungs when his oxygen levels dropped to 65 and had to be put on oxygen. He had an allergic reaction to morphine, and had a seizure because of nausea medication. He also has a feeding tube. On the 17th of February 2022 he developed a fever and was admitted where they did blood work and discovered he had 2 viruses and his blood counts were extremely low.

He finished his last round of chemo on 21 March 2022. He was admitted and had a blood transfusion and platelets because it was too low. He also had an MRI but we have not received his report or any update when and if they will be operating. Kian is seeing a dietician as well as a speech- and occupational therapist because of signs of autism.”

Update 28/02/2023:

“Kian had an operation on 12 April 2022 where half of his left kidney was removed. The surgery was successful and he was discharged on 18 April 2022.

He started with 27 weeks of weekly chemo on 25 April 2022. We had to drive from Kuruman to Kimberley every Monday.  He was sick most of the time, could not eat at all and they had to give him a feeding tube. Kian is now on chronic hypertension medication. Sometimes he could not get the chemo because his neutrophil levels were too low. He also got occupational therapy, speech therapy and physio weekly because of the autism, and he lost mobility in his legs. He finished his treatment on the 28 November 2022 and had an MRI scan, they were happy with his progress, however he still needs maintenance chemo as the nephroblastomatosis are still on both kidneys in order to suppress any more tumors from developing, and to save what is left of his kidneys.

He started with his maintenance chemo on the 11th of January 2023. They have adjusted one of the chemo treatments because it is affecting his mobility and that is a concern for them. The physio therapist said she has spoken with an orthopedic specialist and suggested that a tension release operation should be done. The pediatric oncologist agrees with us that the cause of his immobility is not a sensory thing but a result of the negative effects of the chemo treatment. Will be consulting with them again on 07.03.2023 when we are in Kimberley for treatment.”

By supporting our fundraiser for Kian you can be directly involved in making a positive difference in his life. All proceeds from the “Love and Faith” bracelets are donated towards his ongoing medical care and expenses. Together we CAN change the world, and help a child in need!

Alternatively, please consider a donation; any and all donations welcome. REF: Kian Ludick.

Fundraising for Kian Ludick

Love and Faith Bracelets

The “Love and Faith” bracelets for Kian consist of wooden beads with crystal, silver and diamante fillers.

Colour Options:
1. white & blue
2. grey and blue
3. white, grey, blue mix

Charm Options:
1. faith & cross
2. love you heart
3. believe and hope

To place an order, contact the agent in your area or shop online.

Love and Faith Bracelets © Arms of Mercy NPC

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Fundraising for Lirie van der Merwe – Paraplegia, Respiratory inability, Osteopenia, Epilepsy

Lirie van der Merwe

Lirie`s story:

Lirie van der Merwe is 10 months old and has paraplegia from the chest-line down, respiratory inability, multi-lobar lung collapse, osteopenia, and epilepsy.

Lirie was born at 32 weeks. After 4 weeks in the NICU she suffered a neck injury that led to paraplegia from the chest-line down. Due to this, her diaphragm is paralyzed and she is unable to breathe on her own and is on a home ventilator to breathe for her. She also suffered from a femur break due to her bones being so brittle.

Lirie is currently at home but her home-care is R28 000.00 per month. She gets her feeds through a feeding tube and she is suctioned regularly. She also has a cough assist to get her secretions loose and keep her lungs from collapsing. She has a vigorous daily medical and mediation routine that needs to be followed. The Medical aid is depleted, and Lirie needs her physio and speech therapy sessions.

By supporting our fundraising efforts you can be directly involved in making a positive difference in Lirie`s life. All proceeds from the “Shine Your Light” bracelets are donated towards her ongoing medical care and expenses. Together we CAN change the world, and help a child in need!

Alternatively, please consider a donation; any and all donations welcome. REF: Lirie van der Merwe.

Fundraising for Lirie van der Merwe

Shine Your Light Bracelets © Arms of Mercy NPC

Shine Your Light Bracelets

The “Shine Your Light” bracelets for Lirie consist of pink wooden beads with crystal, silver and diamante fillers.

Charm Options: Diamante Cross / Diamante Crown / Diamante Bird.

To place an order, contact the agent in your area or shop online.

Shine Your Light Bracelets © Arms of Mercy NPC

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Fundraising for Miliah Prinsloo – Rare Genetic Disorder

Miliah Prinsloo

Miliah`s story:

Miliah is just over 3 years old and has an incredibly rare genetic disorder, 16q11.2q21 duplication – which was discovered only recently after years of tests and doctors’ visits. She struggles through global developmental delay, speech impairment, seizures, a heart defect, self-harming issues, obesity and other ailments.

Miliah has already gone through:

3 MRI’s; ECG Tests; Ph7 Test; Tube feedings; Biopsy; 2 Berium Swallows; 2 Metabolic Tests; 2 Geneticist consultation;
Physio since 8 months and needs to continue; Speech therapist, she had every two weeks; Grommets put in; CT Scan;
Xrays; Sonars; Scopes done; Occupational therapy; Correctional shoes (for a year – which hasn’t helped, hence why she will now need to undergo surgery).

Miliah was also diagnosed with chronic sinusitis, which means she’s sick most of the time, with chronic reflux and dysmotility.

There is not much information on her chromosome genetic disorder as it is so rare, which causes a lot of uncertainty, even for some Drs.

Miliah needs ongoing therapy (speech, OT, PT), frequent neurological check-ups, testing and medications, Specialists for her stomach and immune system, as well as many others.

She had surgery on the 18th of January 2022 in order to correct her metatarsus adductus to help her jump, run and walk normally. The bones had to be broken and placed correctly, and Miliah is due back in theatre in 3 weeks. Recovery will take longer than expected (around 6 months to a year) and she won’t be able to go to school for the next 5 to 6 months. During these first 3 weeks Miliah will not be able to walk at all and her legs need to stay elevated, either at home in bed, or on the couch, or in a wheelchair when walking around the complex or anything.

Her mommy works part-time to be there for all her go-to therapies, hospital check-ups and specialist visits, but she had to stop all forms of therapy due to financial constraints.

Please open your heart and support our fundraising efforts for Miliah – all proceeds from the “Crown of Hope” and the “Incredibly Precious” bracelets are donated towards her ongoing medical care and expenses. Together we CAN make a positive difference and help a child in need. Together we can change her world!

Alternatively, please consider a donation; any and all donations welcome. REF: Miliah Prinsloo.

Follow her Facebook Page – Helping Miliah – for live updates on her journey.

Fundraising for Miliah Prinsloo

Crown of Hope Bracelets - Arms of Mercy NPC

Crown of Hope Bracelets

The “Crown of Hope Bracelets” consist of wooden beads with crystal, silver and diamante fillers.

Colour options: Pink / Beige / Grey.
Charm options: Diamante Crown / Diamante Flower / Hope-Awareness Ribbon.

Crown of Hope Bracelets - Arms of Mercy NPC
Crown of Hope Bracelets

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Incredibly Precious Bracelets

The “Incredibly Precious Bracelets” consist of turquoise wooden beads with silver and diamante fillers.

Charm options: Dragonfly / Feather / Cross.

Incredibly Precious Bracelets © Arms of Mercy NPC
Incredibly Precious Bracelets

Shop Online